Frequency of appointments

Hi Tessa After my first visit to the oncologist, I got a phone call from my surgery saying my GP would like to speak to my husband and I. When we went, I was shocked when he said he was referring me to the local Marie Currie Hospice and resisted going for a few months. Then when I did go, regretted not going sooner. They are not just there to help the dying but to help you live life as best you can. I think you should definitely visit your GP once the surgeries open again. Let him know how you feel and ask for a referral. At the hospice they have Councillors, Occupational Therapists, Physiotherapists, doctors who specialise in Pain Management etc etc the list is endless and they are all there to help. It sounds like a good way to start off the New Year! 

Thanks both.

Interesting that daloni had the same situation with inflammation marker.

I am already in touch with the hospice and hoping to go and see their counsellor. It was rather frustrating that I first had contact with the hospice in early December but heard nothing more until I chased them up just before Christmas. Seems that various things had been put in hand but it was all held up by the holidays. Hopefully things will start to move more quickly now. Felt like the season of goodwill had rather forgotten about me.

Yes I recognise depression in myself, I take pleasure in small things, a piece of music (mostly classical), what nature is doing, birds coming and going. I live in an attractive rural area, so even the drive to the hospital is enjoyable for the first few miles. If I can get out for a walk, I like watching how the light changes the landscape, sometimes distant trees seem to light up because the sun is on them. Even grey lichen covered trunks can look bright when the light is right. In my garden there are a few primroses in flower, and lots of bulbs putting up green leaves. 

I have a small band of friends whose conversation I like because we have common interests and can talk about something other than illness. I could feel bitter that others do not visit, but just wish me well. Neighbours all delivered Christmas cards, but none called to actually talk to me. So be it. 

When I was first told I was incurable, I had an intense period tying up loose ends, I finished several long term projects though not to the standard I would have wished. The rest seem unimportant now. I can't concentrate to read and it feels a waste of time. I fall asleep during interesting TV programmes that I wanted to watch. I hit replay but it usually happens again. 

So the depression isn't 100% of the time. But I feel a shadow of my old self, sometimes my spirit feels it has been consumed by the NHS. I remember being very depressed in my last job - driving to work then sitting crying in the car park. Then a miracle happened and I got early retirement and 15 years of being able to enjoy life. Even then I gave up too much time to organising social events for various societies who have given me very little support now I need the companionship. I now realise how superficial many of those relationships were and feel a mug for giving up precious time to them when I could have spent it on my own creative projects and had more to show for my time on earth.

I have a friend of 83, in reasonable health. She was always desperate to be a published author but has now come to accept that it isn't going to happen. She feels she hasn't made much of a mark on the world, but few of us do, only on the circle close to us. Some of my history research is now in various archives and I hope it might be useful to someone one day. I've also chosen an appreciative cousin to pass the family archive onto. Some of them just wouldn't care. So I feel I have done my best in passing on what I can to the right people. It takes a lot of pressure off me not to worry I have left important things undone.

Maybe I'll think of another project that will inspire me without exhausting me but the idea hasn't come yet.

Tessa

Hi Tessa Well, I think most of us here have been where you are now, realising people you thought of as good friends and neighbour's just don't know what to say, so don't phone or knock the door. I don't think they realise how hurtful it can be when they go out of their way to avoid you. Especially as you say people you have supported in their time of need makes you feel abandoned.

I'm pleased you are now in touch with the hospice and I'm sure when things start up after this week, they will contact you with a copy of their day to day schedule to ask what you think would help you.

Im sure your cousin would like to be steered in the right direction so that she can carry on what you have started! Have you been looking up your family history? Sounds interesting! I'm sure it won't be long before some other project comes to mind.

Hi /Tessa,

I'm pleased to hear that you feel like you are moving forward again and have confidence in your own doctor and the one you have seen recently.

I'm afraid that the holiday season often means that new people can often feel or even get left out.  The services are usually trying to give a better experience to established members but with less availability of staff or volunteers due to the conflicting demands of the season.  I even have some sympathy for your neighbours as I know that if I stopped to talk every time I delivered a card it would take me hours to get around.  I also assume that they will be busy in the run up to Christmas and would not really thank me for expecting them to stop what they are doing and chat.  Perhaps after Christmas has passed you could invite one or two of them round for a cuppa and a chat.

I have not yet been to my local hospice although I have checked out the services on the internet.  I do know that a lot of the members on this site who attend really enjoy the friendship and support that they receive as well as the consistency of the medical support.  I hope that you find this as well.

I know what you mean about struggling at this time of year to find things to look forward to.  I too enjoy going on trips but at this time of year that often means going somewhere to enjoy the view from my car or a café.  I suppose that your medical regime makes any longer trips away very difficult if not impossible.

One of the things that you said you enjoyed was music and one of the things that I have introduced is trying to get to live music and theatre more often.  I do find that even things such as this (or going for a nice meal) help my mood.  It is difficult at this time of year with the short daylight hours as even going out can be limited and when you stay in it is so dark.

I hope that things improve for you now, especially with the hospice.

All the best,

Gragon xx

Hi /Tessa and the rest of the group,

My apologies but I have inadvertently posted in the End of life group and although incurable I am not yet at the End of life stage.  I have previously contacted the community admin and asked if this group is going to be given it's own group as I have nearly posted several times but realised at the last minute that it is not just a post in the incurables group.

They did say that they were looking at making the End of life group a distinct group and were hoping to do so soon.

All the best,

Gragon xx

Dear Gragon, I sometimes think we need a forum that could include anyone facing end of life issues and that could include carers as well as patients themselves, as in the carers section not everyone is dealing with a family member who is terminal/ end of life but would like to discuss openly subjects like hospice, palliative care stopping treatment etc. All these subjects are very sensitive and people who are still pursuing various treatment options don’t necessarily want to be confronted with these issues, so it possibly inhibits conversation.

I’m glad you two are discussing the need of a more individual group that deals with end of life. At the moment I’m okay but the doctor keeps going on about Pre-emptive support and end of life treatment. I have previously started a discussion but get no response. Maybe some of us that are facing it just don’t want to face it. But there is so much , so many questions etc. I’m so glad you two are raising the issue.

at the moment how long on the average do you and others have to wait up to 7 or more weeks to see your GP? That is my biggest problem. Then there’s my deafness that gets in the way too. 

Hi ALL, Gragon I have done the same as you, I usually try not to post in the End of Life group but as you say, when you are reading the posts, you sometimes don't notice. I agree a separate group would be ideal but if it too much bother then maybe just when you go into the "Latest Activity" Tag if this could group them separately, or just bunched together, this would be of great help.

I do hope no one has taken offence with me posting here but it honestly was a genuine mistake!

anndanv

Hi Annette

I have made the same “mistake” but I don’t think anyone takes offence.

I am not sure I support the idea of a separate group. I feel as though I straddle the two groups. All of my needs are palliative but some is treatment, designed to prolong my life, and some is symptomatic, designed to help me live better. 

The discussions that take place in the end of life section are incredibly useful and interesting so being able to see them and join in from the incurables group works well for me. I’m able to choose whether to join a specific discussion or not. 

xx

I haven't heard the phrase pre-emptive support except on here. Is it the same as palliative care? 

I never see my GP. I phoned them to request the palliative care referral to my local hospice as recommended by the hospital. GP wanted me to go in and discuss but I didn't relish sitting in a flu ridden waiting room, and didn't see the point if the care was going to be provided by the hospice not the GP. I sensed she wasn't happy about that but I was so fed up being hauled back and forth to outpatients I couldn't face another appointment. 

I know what path I want to go down, it's just timing it. There is no definitive way to measure progress of my illness. I feel I am reaching another level of tiredness. Just want to sleep most of the time and everything seems so much effort. Friends came yesterday and I enjoyed their company but was so tired by it. I seem to spend a lot of my time in a day dream like state, not quite asleep but able to detach from reality. At least my problems go away for a while when I'm like that.

Tessa